22 YO daughter diagnosed with MDS, when do we get to finally break??

[surfjon]

When do we finally get to break down?? Stop being strong?? Stop smiling on the outside whilst inside we're dying, going slowly insane, hiding our most fearful thoughts?? HOW FREAKING LONG?

 

Does the universe ever stop dealing out insanity? Must we be buffeted forever by winds that stink of rot and death?

 

I'm sick of being "strong"...........

 

I've chanted "And this too shall pass" until these are the only 5 words I know anymore, but it still doesn't pass

 

"Grandfather Dies"

"Father Dies"

"Child Dies"

 

An ancient zen koan which is a blessing....

The natural progression of life and when this order is disturbed, all is turned asunder, hearts break, parents cry...languish....exit themselves.

 

It's all too unfair and painful to deal anymore.

[Seraphim]

I am so sorry to hear about that. Hugs. You and your family will be in my thoughts. Take some time to process this information and be gentle with yourself.

[IAmFCA]

I am so sorry Surfjon.

 

I am hopeful there are gifts for you to find somewhere, to find the way the pain flows bringing gifts along the way, not that one wishes for the painful event, of course, but that there are gifts to be found. I do not know another way to cope but to find the little gifts.

 

Gifts can be fleeting and for me, still helpful stepping stones to finding joy. When my mom died, one gift was in the form of a butterfly. I say this to show how far I stretch to find a gift. Trade my mother for a butterfly? Goodness no, never, that was offensive to my ear even as I wrote. Still, be grateful for the butterfly that arrived that morning, sitting on my sister's shoulder as if it were a pet? And for the ones in my yard later that day? And for every butterfly afterwards that seems to fly near us? Absolutely.

 

I am truly sorry for your pain. I hope that your music is a comfort at this time of learning your daughter's diagnosis.

 

link removed

[ParisPaulette]

I'm sorry you're going through all this. I've been through something similar, it's awful. And right now I'm getting to watch an elderly parent devolve due to Alzheimers. I wish I could tell you why bad things happen in the world, but I can't. All I can tell you is that you need to let yourself have time to vent and/or break down and cry or yell or whatever. You do need that, however you do it. It doesn't matter what that thing is, how silly or ridiculous it looks, what others think. Only that you take time to allow yourself to stop being strong, to vent and let out your emotions until you feel better or calmer or ready to get back into the ring.

 

For me it's getting into my truck, driving someplace remote and then I play loud angry music and cry and scream and pound the wheel until I'm spent. Then I wipe away the tears and go back to being strong. And I have to do that and I have to have time alone or it just doesn't work for me and I slide into a very dark depression.

 

Find what it is you can do that helps, it's all I can tell you to do and that I'm sorry and I wish none of us ever had to go through this crap.

[Nuby]

I came accross this post and I just wanted to say that myself, along with many people around the world in this forum will be sending you strength and prayers.

[pippy longstocking]

I wish I could burst on here and give you an answer surfjon , but , as you know I can't . The why and hows of the universe are something we are not made privvy to ...so I wont sit and try and make something up ....

 

I also say that sentence a lot " this will pass" because in my darkest hour I have to say something !!!!!!

 

I am sorry for what you are experiencing , and from my heart I send you and your family my love , my strength and my thoughts ... xxxxx

[tiredofvampires]

Surfjon, I'm really so sorry you're going through this.

 

But what kind of MDS does she have? I don't know a whole lot about this disease, but from what I've understood, it's not necessarily a death sentence, and in fact in some cases, it can be mild enough that the patient lives out a normal life span. So there is a spectrum of severity in this disorder.

 

Was she diagnosed with the cancerous type, and what prognosis did the doctor give? Do the treatments proposed suggest a good chance of managing it, or keeping it from becoming progressive?

 

I suffer from a chronic illness that has impacted every aspect of my life in a catastrophic way. It's not life-threatening in the sense it could terminate my life immediately, but it has caused me to suffer in ways that often have felt that my heart and soul have been dying.

 

So having to face mortality, this is something that has really helped me stay the course -- understanding that death might not be the worst thing. The worst thing is the feeling of being robbed, that life isn't fair, that there is no hope to be able to ever experience life with this. Of course...life is not fair. It's a fact that we can't draw any comfort from. But you know, I have life yet to live, even with this. And so does your daughter. And during that time, she will be getting treatment, she will be here and alive to take in the love you can offer her, the love of her friends, the beautiful things that this world has to offer. Everyone is dying -- and we are lucky to even have a glimpse of this magnificent creation before it's over. All of us are only here for a nanosecond in the scheme of things. So it's HOW you are living and she is living that matters the most. This is a time to fully embrace life. Lots of people live a long time and never stop to appreciate the wonder.

 

Of course, you must take whatever time to process this however you need to...as others have said. All your emotions are okay...and so let them out, and let them be.

 

You may also want to nurture yourself by getting bodywork done...get massages that release endorphins, or energy work to help you release the stored feelings and pain.

 

Also, if you are into zen...or buddhism of any stream, maybe work with the wealth of teachings out there that talk about impermanence. "This too shall pass" never fails, because life is so, so ever-changing, and for better or worse, we're asked to realize how impermanent all things are, looking out from a really panoramic lens. If you look deeply into it, there is no moment that you can't handle and accept as it is -- it's the fear of everything to come, the thought that "it never passes", the clouds of anticipating more hurt, those are the things that are intolerable. THIS moment...in THIS moment...you can take it. You can handle it. You're alive. You're okay. It's okay. And so it's bearable if you strip all that other chatter away (which is hard, but try it out). And this moment, this situation, DOES pass -- everything changes from second to second, minute to minute, hour to hour, day to day, and on. So break it down into smaller steps and bites.

 

I've experienced the same kind of "At what point have I been handed enough lemons? THERE'S ENOUGH LEMONADE HERE TO SERVE THE WHOLE GLOBE 80 TIMES OVER!!!" feeling, like ENOUGH ALREADY!! But then...you graze the tip of this bent, twisted sword again in the fire, to temper it and strengthen it back to being straight. You sharpen the edge again, hone it. And then you get back out there, into the battle.

 

It's our only choice, and the more things get piled on, the stronger you get. But don't focus on having to be strong. Focus on each day being a devotion to living the best you can in every moment, and helping your daughter to do the same.

[surfjon]

Thank you all for the kind responses.....

I've come thru some hard times here on ena, never dreamed I'd be here for any reason such as this, but such is life...............

 

Leaning hard on friends, family, meditatition on the transient nature of life and love, and my guitar...............

[pippy longstocking]

how you doing fella ? sending lots of love to you xx